HAMILTON SPECTATOR – AUGUST 6, 2013
EDMONTON A member of the Alberta legislature is adding his voice to the demand for immediate action to save a young girl wasting away due to a rare enzyme deficiency. Stephen Khan, in a letter on Facebook, wants Alberta Health Services to fast-track a decision on whether it will fund treatment for the disorder, which causes cellular waste to build up in the body.
Khan is the Progressive Conservative member for St. Albert, where three-year-old Aleena Sadownyk lives.
Sadownyk has cellular waste building up in joints and around her heart.
A drug called Naglazyme can stop further waste from building up, but can’t fix the damage already done.
The drug costs at least $300,000 a year to administer and provincial health officials are still deciding whether to approve it.
The Canadian Press